HealingWell
Search Close Search
☰

It's been a long time... have some questions about SCS

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/27/2015 5:54 AM (GMT 0)
Hey all, it's been a long time since I was here. Here's a little brief background...
I was a perfectly healthy, single father 4 years ago, other than having had a gastric bypass, and a few complications with that. In April 2012, I severely injured my back while working on an electricity producing wind turbine. In September of that year,I had to have a 360 fusion at the L3-4 level. The fusion didn't work, and my back is still in constant severe pain. Two weeks after the fusion surgery, my CRPS started. It started in the left leg, and didn't take very long to move over to the right leg too. The CRPS is at stage 3 now, and I get pretty frequent flareups. I've been with the same pain doc since early last year, and so far, it's been a rough ride with him, but there's not much I can do about it.

Anyways, I'm hoping to be getting a trial for an SCS unit pretty soon, I'll be having a psych evaluation required by work comp next month, and was wondering what kind of luck anyone has had with them, for back pain, or CRPS?
Posted 8/27/2015 7:38 AM (GMT 0)
Well look what the cat drug in! Lol welcome back Matt and good to see you. Sorry the PM is giving you fits but we see more having issues with them these days than not or if they have a awesome PM the dang pharmacy is giving them a headache,no win it seems and some are having to resort to the pain pump for relief of any value. As for the SCS I personally am not a fan. Seen more waste of time and not so much relief and add the complications that tend to arise and well just don't seem worth the trouble.

That's me though and based on my experience with working ortho/neuro and what we see here but remember we usually get folks having trouble and looking for answers after the fact. Even if trial goes great the real deal can still fall short of your expectations. Thats always the key anyway right? How much relief are you expecting?

You can always do a searc here at the forum and you will find lots of threads and posts about the stim and it will be good reading especially those after having one done and any complications that arose then you will at least know what to expect.

Good luck to you and visit more often.
Posted 8/27/2015 10:49 AM (GMT 0)
Hi!! I had one and it did work for a couple of years. But then my pain increased to the point that it wasn't effective anymore.

Good luck with your journey!
Posted 8/27/2015 11:20 AM (GMT 0)
Matt, mine has been a load of trouble in terms of "maintenance" - lost count now of the number of lead migrations and revisions I've needed, had early battery failure at one stage and needed a replacement IPG that's not much better than the one that was replaced (to maintain the battery on the rechargable units you need to keep them at >50% charge, and to do that I've got to charge at least every other day because I'm such a high end user) but in terms of pain relief it's a life saver pure and simple. I can't physically get shoes on my feet because of the contractures caused by my dystonia, but the SCS lets me wear socks and long pants with relatively little discomfort and takes away much of the "burning skin" and hypersensitivity that the CRPS causes. It doesn't however to touch any of the deeper icy bone pain or do much for the electric shock pains I get.

Another thing to consider with any surgery and CRPS of course is that you may develop new issues at the surgery site...I still have considerable discomfort around both my SCS and pump sites - and have had my SCS since '06 and pump since '08.

I'm surprised to hear you describe your CRPS in stages. Staging of CRPS was done away with as anything more than a very general guide probably more than a decade ago as a fair number of us exhibit signs from multiple "stages" at any one time and it just became too confusing.
Posted 8/27/2015 3:36 PM (GMT 0)
Hi Matt.

I had a C3-4 fusion just under a year after yours. I fell and broke my neck, big chunk off C3 and a broken bone spur that damaged my cord. At least my fusion "took" after nearly a year, but C4-5 fused by itself also.

I know we don't have the same diagnosis, but a lot of your symptoms are the same as mine.

I have dx "central cord syndrome." I have most of the symptoms of CRPS, just no muscle wasting or skin thinning.

I have problems from C3 and below, plus headaches. I didn't have the gastric bypass, but I had a stomach surgery that did much the same (Nissen fundoplication for stomach pushed into chest), resulting in stomach much smaller than before. I have constant muscle spasms that never relax, worse in the lower legs. My left shoulder has a bone chip and some torn stuff, needs surgery. When I try to get up in the morning my whole body is in spasm, shaking, jerking, stiff but I can work it out. After I get a pill and move for a couple of hours I can work a little.

There is nothing that does anything for the leg pain (worst waist down, but everywhere below neck), extreme sensitivity to touch, and cold, as far as I have experienced. I have to wear long pants and fluffy socks in 80 degrees. I get some relief from Norco for the shoulder and back pain (arthritic bone spurs, etc.) and headaches. I get a little serotonin help from tramadol. My docs to worry about addiction way too much for my old age, and I don't tolerate most pain meds and none of the muscle relaxants except Valium, which they won't give me for fear of addiction. I'm one of those people who don't react at all to morphine. Most recently I've been trying Klonopin, which helps the leg spasms some and stops the body jerking all night, but it's not really worth bothering with because I'm too tired and not spastic enough to walk the next day. One good thing about spasticity is no muscle wasting and being able to walk, even if poorly.

Since my damage is mostly at C3, there's no use getting a stim unit. The messages to the brain are garbled there, not from my legs. I've had the nerves tested. External back stim (TENS) relieves my back muscle spasms.

I have loads of dysautonomia - no sweat below C3, bladder and bowels not working right, orthostatic hypotension and blood pressure fluctuations, autonomic dysreflexia episodes.

www.apparelyzed.com/ I'm sure you've read everything already.

But enough about me. I'm just suggesting getting tested before jumping into scs. Get second opinion, maybe more.

Blessings. Keep posting. I'm anxious to hear your progress.
Posted 8/27/2015 4:28 PM (GMT 0)
Hi Matt & welcome back. Yes, it has been a long time since we have heard from you. So sorry to read what all you are dealing with.

As for the PM dr that seems to be about par for the course these days. The environment of pain mgt has become jaded so to speak for chronic pain patients. The drs feel like they are under the gun constantly since the DEA became involved. Its certainly not what it use to be thats for sure.

I would urge you to do your homework on the SCS units. Do not make a hasty decision or let a dr talk you into one. Type in SCS units in the search feature above & read up on experiences by many here. Unfortunately, you will find more failures here in the forum than success stories. But, regardless you need to be informed of the potential down side to these units when making your decision. One thing I have noticed is many have said the trial was different than after implant, meaning less pain relief after the implant than during the trial. The hope is the once the leads scar over there will be better relief. Also, since you are dealing with worker's compensation insurance after implant if the unit needs tweaking which it will in all probabuility, private insurance gives people alot of grief covering the cost for this & it costs several thousand dollars for them to tweak it. Will WC pay for it or fight you tooth & nail for this cost? Like I said, a lot to think about.

As for Laura's comment on the stage of your CRPS, she is in a different country & they have different protocols than what we have here in the states. As far as I know here in the states they do give CRPS in stages to the patient.

Keep us posted on how you are doing.
Posted 8/27/2015 8:35 PM (GMT 0)
Diagnostic & assessment protocols are fairly universal, even though our treatment protocols vary...that comment is based on papers I've read, a few US & UK based doctors and probably a hundred or more US based patients I communicate with or have communicated with over recent years, as well as my own team!

But yes, definitely agree with your comment on trial results vs permanent - I think the dr who did my original one is one of very few I've come across who uses the permanent perc leads for the trial and if you opt to go ahead connects the IPG directly after the trial rather than having to remove the leads and then try to get them back into exactly the same position they were in for the trial ... and am sure not getting quite that same spot accounts for a lot of people not getting the same degree of relief with their permanent implant as previously.

L
✚ New Topic ✚ Reply